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D – is for Diagnosis A-Z Blog Challenge Day 4

Ahhh diagnosis – this has been HUGE for us over the years. When we first got custody of Little Man from his bio mom, the only thing she would tell us was that he had some “health problems” and said the official diagnosis was “hyper-motive seizures” (go ahead… look that one up – I’ll wait)… Yeah – NO. SUCH. THING.

What we noticed first off was that this little guy had some serious delays developmentally, but health wise he was fine. That’s when our journey began. We saw several children’s mental health specialists settling for our first hero in Little Man’s journey – Dr. Robbie Adams – he was awesome, but went on to bigger and better things than our small town of Rome, Georgia could offer him. He was the one that first told us that he “thought” little man was “on the spectrum” and gave us our first PDD-NOS (pervasive developmental disorder – not otherwise specified) diagnosis. He was also the one who told us “He has built himself a bridge between our reality and his – if we can ever get him halfway across that bridge… you’ve got a Nobel Prize winner on your hands”. At 9 little man could repeat verbatim a lecture on Wormhole Theory he had heard on the science channel – and could give you the textbook definition of Adrenaline… from memory. He’s really, really, really intelligent.

Alas, we have tried many times to actually get someone to say “Yes, he is Aspergers” or even “Yes, your son is Autistic”… but because Little Man hits the markers for nearly every childhood mental illness known to man, we are stuck with PDD-NOS. Here is what The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders uses as critiera for an autism diagnosis: (everything in red is something displayed by Little Man)

I. A total of six (or more) items from heading (A), (B), and (C), with at least two from (A), and one each from (B) and (C):

(A) Qualitative impairment in social interaction, as manifested by at least two of the following:

Marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction.

II. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:

(A) Social interaction.

(B) Language is used in social communication.

(C) Symbolic or imaginative play.

III. The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder.

So why can’t they give us an actual Autism diagnosis? Not really sure – I just know that we’re searching, searching, searching for answers – hoping that the next doctor or therapist can help us even more… we need something – anything that will help him. Therapies designed to be used for Autism are not used on our son, because they don’t believe he’s autistic – developmentally delayed, yes… but again the PTSD just keeps getting in the way, as well as the Paranoid Schizophrenia. They write off the hand flapping and finger counting he does as OCD… All in all we just need better Children’s Mental Health care – one really big reason why we moved out of Georgia to Indiana, they have some of the best here…

Sorry this one was so long guys – we’ll get back to short and sweet tomorrow!

I’ve worked quite a bit with people with varying autism diagnoses in my former jobs/volunteer work. Several have had the same diagnosis as your son, PDD-NOS. I’ll be honest; in several cases, I felt the parents should have gone to another dr and had more tests done because the children were very clearly on the autism spectrum. I think a major problem is the subjective nature of a diagnosis. I hope that you continue to advocate for your son by trying to go to other therapists or request further testing. It is so difficult to be a parent of a child with special needs- you have to be constantly questioning, just as if not more educated than the doctors, and almost relentlessly demanding in your pursuit of care for your kid.
I so deeply admire you; your son is blessed to have a mother who cares so much.

Thanks Tiffany – I appreciate your comment and admiration. Some days we feel as we’re spinning our wheels – but we can never stop fighting for him, even after he turns 18. He didn’t ask to be this way, and there is nothing that we will allow to stand in the way of getting him the treatment and diagnosis he needs!